walkingwithjane.org will publish a first-person piece from a NET cancer patient about her experience with liver chemoembolization in the next couple of weeks. I’m also in the process of writing a more general piece on the embolization process.
…getting your story out to a broader audience.
But that got me thinking: We have a lot of new and not-so-new treatments, procedures and trials going on that most people don’t know a lot about. It’s one thing to read a piece written in scientific language and quite another to read something by someone who has actually experienced it firsthand. I’m pretty sure there are few, if any, doctors or researchers who have taken CAP/TEM or had a liver ablation done on them.
Your experience
What I’d like to do is a series of pieces, either written by patients or based on interviews with them, about things like liver embolization and what their experience was with that procedure. As I said we have a piece coming on the chemo form of that, but pieces on bland and radioembolization experiences would be good–and valuable–to have.
…few, if any, doctors or researchers…have…had a liver ablation done on them.
The object here is to demystify the process so that patients dealing with similar choices have actual patient experiences to help them unravel what they are about to experience.
A call for writers and subjects
This is basically a call for people to write about their experiences with various treatments and procedures, as well as ideas about what you’d like to see covered.
The object here is to demystify the process…
Or you could volunteer to be interviewed by me about a specific procedure or drug you’ve experienced if you don’t want to write about it yourself.
Thoughts on starting points
Four things immediately leap out at me as clearly being of interest: bland and radioembolization, PRRT, Gallium-68 scans, and CAP/TEM–which is in trials in the US but appears to be in use in Europe more broadly. Liver ablation therapy is another possibility, though I have seen fewer patients talking about it online. If you have experience with any of these–or some other form of therapy or testing–Walking with Jane is certainly interested in getting your story out to a broader audience.
…a call for people to write about their experiences…
If you have other things you’d like to write about–or things you’d like to see written about here–don’t hesitate to suggest them. And if privacy is a concern, we can certainly take steps to keep you anonymous. Please contact us at walkingwithjane@gmail.com if you’d like to do either one.
The value of a community goes beyond emotional support. A community shares knowledge about what each of its members is experiencing. Shared knowledge is no less important than shared joy and sorrow.
New York Times media columnist David Carr, who died suddenly February 13, was a lungnoid according to the NYC medical examiner–and complications from his NET cancer caused his death. The medical examiner also cited heart disease as a contributing factor. The report calls the NET cancer metastatic, which means he could have had tumors in his liver or elsewhere.
Carr was clearly an interesting and complicated man.
Depending on whether or not his tumors were producing serotonin and were in his liver as well as his lungs, that could have had an influence on his heart disease.
Carr’s NET cancer connection
Reports have not said, however, whether or not that heart disease was carcinoid heart disease or not. That Carr earlier used cocaine and other drugs may have contributed to his heart disease–or been entirely responsible for it. Without more detail than is in the published reports, we can’t be entirely sure.
…complications from his NET cancer caused his death.
To its credit, the New York Times article quotes the medical examiner’s report in the third paragraph of its coverage, as do some other media reports. However, the vast majority report only that lung cancer was the cause of death, complicated by heart disease.
Media coverage of Carr’s death
Most reports immediately jump into a discussion of Carr’s smoking habit either stating directly or implying that his lung cancer was caused by that. Not even the Times‘ report discusses neuroendocrine lung cancer, beyond the quote from the medical examiner.
…we can’t be entirely sure.
Carr had beaten Hodgkins’ lymphoma, an experience he talked about in his 2008 memoire, The Night of the Gun. Most reports included his lymphoma, properly named.
Simplifying cancer
One of the problems all cancer advocates face is the public perception that cancer is a single disease. Even among people who understand there is a difference beyond location between breast cancer and lung cancer or lung cancer and prostate cancer, few understand that there are multiple forms of each–all of which have distinct courses, prognoses, and treatments. In fact, even among NET cancer patients there is not always an understanding of how many different forms carcinoid/NETs can take.
Most reports included his lymphoma, properly named.
The media today are in the business of simplifying the complex to a level most people will understand. This has always been the case to a certain extent–and with cancer in particular, it arguably always has been.
Another missed opportunity
Still, Carr’s death represents, as did Steve Jobs’, a missed opportunity for the media to educate the public about NET cancer. As a reporter, I like to think I would have seen “small cell neuroendocrine lung cancer” and asked how that was different from other lung cancers. It was certainly an idea I tried to instill in the young reporters I trained over the years.
The media today are in the business of simplifying…
Carr was clearly an interesting and complicated man. We will miss him as a media critic and as a keen observer of the world around him. I wonder what he would have written about the reporting on his death. That the media missed a major part of the story by failing to confront the unanswered question–what is neuroendocrine lung cancer?–would surely have irked him.
(Thanks to Ellen DeSilva Thompson for pointing David Carr’s story out to me. My focus has been elsewhere the last few weeks.)
A shadow can only tell us so much about the person who cast it. Reporters have to look beyond the obvious sometimes to get the full story.
Hello and welcome to the first edition of the Walking with Jane NET Cancer News Podcast. I’m Harry Proudfoot, the chairman of Walking with Jane, and I’ll be your host for these weekly audio podcasts. Our hope is to bring you up-to-date on what is happening in the Carcinoid/NET cancer community, both in terms of the latest research and treatment and in terms of fundraising and awareness events going on across the world.
If you have news you’d like to share with that community—whether it be a piece of research or an event—please send an email with the details to walkingwithjane@gmail.com. We’ll check it out and get a story on the air as quickly as we can. We will also post confirmed fundraising and awareness events on our calendar page at walkingwithjane.org.
AdVince virus close to initial trial
Our lead story this week is about the Uppsala Oncolytic Virus trials researchers hope to begin this spring in Sweden. The initial test will be on pancreatic NETs patients. But all of this is pending approval from the Swedish Medical Product Agency’ of the researchers application. That application is supposed to be filed in either February or March of this year.
The treatment has been renamed AdVince for the late Vince Hamilton, whose large donation has made clinical trials possible. Hamilton, who owned Tethys Oil, died of NET cancer in March of 2014.
The AdVince for the trials has been produced and purified and the protocols for the trials are being finalized. This initial human trial will begin with dose escalation to demonstrate the virus is safe for human use. Researchers will try four different dosages with three to six patients in each dosage group.
The AdVince virus is programmed to attack NET cancer cells while leaving healthy tissue alone. The hope is the virus will destroy the tumors it finds. If it works as hoped, it could offer patients the possibility of a cure.
The trial is six months behind where researchers hoped it would be at this point.
CFCF immunotherapy initiative
Another possible cure may come from research into immunotherapy. The Caring for Carcinoid Foundation has announced it will fund three separate initiatives on this potential treatment, including a clinical trial involving a combination of two immunotherapy drugs already in trials for other cancers. That trial will take place under the direction of Dr. Pamela Kunz of Stanford University who will lead an interdisciplinary team.
Immunotherapy expert Dr. Carl June, and neuroendocrine tumor researcher Dr. Xianxin Hua, both from the University of Pennsylvania will head a separate project that will develop immunotherapies specifically for NET cancers. They plan to modify CAR T-cells to target and kill neuroendocrine tumor cells, a method used in patients with other cancers that has had strong successes.
The final piece of the CFCF initiative will fund basic research into the immune characteristics of NET cancer tumors to guide the organization’s testing of immunotherapy treatments. The Foundation is inviting researchers to apply for grants for studies in this area of research.
Initial funding for all three of these initiatives will come from a one million dollar grant to the Caring for Carcinoid Foundation from the TripAdvisor Charitable Foundation. Caring for Carcinoid’s executive director Ron Hollander sees that grant as, Quote, a challenge to CFCF and the entire NET community to rapidly raise the remaining one million dollars to pursue these exciting projects. UnQuote.
Meanwhile, efforts continue to find therapies to slow down NET cancer tumors and improve the quality of life for the approximately 112,000 known patients with NET cancer. This week’s Gastrointestinal Cancer Symposium in San Francisco will include a presentation and two posters on the CLARINET phase three trial of lanreotide. That drug was approved for NET cancer patients in December of 2014 by the FDA based on that trial.
The drug, which is marketed by Ipsen Pharmaceuticals under the trade name , showed a minimum 22 month progression free survival, though the data had not fully matured at the time the study was reported to the FDA. Like Sandostatin, the drug is injected in a clinical setting.
NETwalkers Alliance new team name
Finally, Walking with Jane will walk in this year’s Boston Marathon Jimmy Fund Walk again t with our partners from Caring for Carcinoid, the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and Kulke’s Krewe. But the team will have a new name this year: the NETwalkers Alliance. Our team name last year was so long the Jimmy Fund Walk organizers had to reduce the size of the print and extend the name over two lines in publicity materials.
Fundraisers for the team have already begun and will include the Hank Landers Memorial Golf Tournament, letter writing campaigns and other events that are still on the drawing board. The team hopes to raise at least $100,000 this year for NET cancer research at the Dana-Farber Cancer Institute.
Be well
That’s it for this week. If you would like a transcript of this broadcast, you can find one at walkingwithjane.org/news. That transcript will also provide links to more detailed information about any of these stories.
This is Harry Proudfoot. Until next time, be well.
My hope is that this weekly podcast will keep people up-to-dateon the latest NET cancer news. If you have something we need to cover, let us know at walkingwithjane@gmail.com.
